Kleine-Levin Syndrome

Posted by kaseykalb @kaseykalb, Sep 4, 2018

My 16 year old son was recently diagnosed with Kleine-Levin Syndrome (KLS). This has been an on going battle for over 3 years now. I also have a daughter that was diagnosed with narcolepsy at around age 16-17, but had symptoms years prior to being diagnosed. I was originally told that there was no possible way that I could have one child with narcolepsy and one with KLS. IF I did, my family would need to be part of a study. Both children had issues with being sick a lot as younger kids. Both pregnancies were healthy pregnancies. I did have strep throat with my son, and I did have the flu with the other. My son had RSV at 10 weeks old. He was a very normal, active little boy. He was in and out of hospital with croup and pneumonia, which finally faded, but that is when the sleep issues started. This year he got an upper resp. cold and broke out in a rash, Guttate psoriases, which cleared with Azithromycin. Any one out there with similar issues or advice???

@tiffanyb

My 19 year old son started symptoms of KLS in Icti Oct 2018 while at college. He spent 2 weeks in the hospital, literally tested for everything! All was normal except elevated copper. He improved over three weeks, finished his semester at college, then relapsed. Same symptoms excessive sleep, feeling unreal, etc for two weeks again. He went back to college, took a full load of 16 credits, got all A’s, and moved home for summer. Once again, extreme fatigue (worse than ever) and severe sense of derealization. It’s been 2 weeks today and no sign of recovery yet. It’s SO terrifying and heartbreaking. There has to be hope, a chance at thus stopping and not happening again.

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Hi, @tiffanyb – welcome to Mayo Clinic Connect. With your son's ups and downs with the Kleine Levin syndrome, I can imagine it's been heartbreaking.

I'd like to introduce you to some other members who've participated in this discussion, like @momnxtdr @pbledso24 @jenniferhunter @kaseykalb @hopeful33250 and others, who may have some thoughts for you as you've not seen any recovery for your son in the last 2 weeks since his extreme fatigue and severe sense of derealization. Though @ihatediabetes' son has a different diagnosis, she may also have some perspective for you, and @Jody3 @barsta also may have some input.

Will you share more about the derealization you've noted in your son?

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@tiffanyb

My 19 year old son started symptoms of KLS in Icti Oct 2018 while at college. He spent 2 weeks in the hospital, literally tested for everything! All was normal except elevated copper. He improved over three weeks, finished his semester at college, then relapsed. Same symptoms excessive sleep, feeling unreal, etc for two weeks again. He went back to college, took a full load of 16 credits, got all A’s, and moved home for summer. Once again, extreme fatigue (worse than ever) and severe sense of derealization. It’s been 2 weeks today and no sign of recovery yet. It’s SO terrifying and heartbreaking. There has to be hope, a chance at thus stopping and not happening again.

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I'm sorry to hear that son is in episode. We've had great luck staying out of episode by focusing on my son's gut health. He is on the Keto diet, takes prebiotics and probiotics. He also sees an Accupuncturist.

Liked by Lisa Lucier

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@lisalucier

Hi, @tiffanyb – welcome to Mayo Clinic Connect. With your son's ups and downs with the Kleine Levin syndrome, I can imagine it's been heartbreaking.

I'd like to introduce you to some other members who've participated in this discussion, like @momnxtdr @pbledso24 @jenniferhunter @kaseykalb @hopeful33250 and others, who may have some thoughts for you as you've not seen any recovery for your son in the last 2 weeks since his extreme fatigue and severe sense of derealization. Though @ihatediabetes' son has a different diagnosis, she may also have some perspective for you, and @Jody3 @barsta also may have some input.

Will you share more about the derealization you've noted in your son?

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Thank you for that information!
My son feels like nothing is real, not him or anything around him. He says it feels like he’s in a movie. He says he feels like could do anything and it wouldn’t matter because he’s not real. He will actually pinch himself hard to see if he feels it. He gets startled very easily, too. This is totally not like him normally. He’s an outgoing, hilarious, empathetic, loves life kind of guy.

Liked by Lisa Lucier

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@momnxtdr

I'm sorry to hear that son is in episode. We've had great luck staying out of episode by focusing on my son's gut health. He is on the Keto diet, takes prebiotics and probiotics. He also sees an Accupuncturist.

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Can I ask the dosage for the pre/probiotics? Are you working with a nutritionist? So glad you have found him relief. How many episodes did he have?

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@pbledso24

Hi! My daughter had KLS for approx. 4 yrs during her teens. She was put on Depakote her Sr yr of H.S. and thankfully she didnt have another episode.

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Can I ask how many episodes she had total? Also, does she have any cognitive issues remaining?

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@momnxtdr

I'm sorry to hear that son is in episode. We've had great luck staying out of episode by focusing on my son's gut health. He is on the Keto diet, takes prebiotics and probiotics. He also sees an Accupuncturist.

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Sorry for all the questions, but what does the acupuncturist work on?

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@tiffanyb

Sorry for all the questions, but what does the acupuncturist work on?

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Her focus is detox and brain clarity. I've taken him in a bad mood and he's come out laughing.

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@tiffanyb

Can I ask the dosage for the pre/probiotics? Are you working with a nutritionist? So glad you have found him relief. How many episodes did he have?

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My son is 7. It started with EBV in December. The doctor expected him to be better in 10 days or so. When he continued to sleep for 15-20 hours we started seeing specialists. 13 doctors later, the immunologist referred him to a neurologist. That's who put him in the diet, probiotics, etc… that was 4 months in and with in 2 weeks he was out of episode. I am not sure if he had several or one long one. He was Homebound from school the entire 2nd semester.

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@tiffanyb

Can I ask the dosage for the pre/probiotics? Are you working with a nutritionist? So glad you have found him relief. How many episodes did he have?

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I am working with an immunologist not a Nutricianist. His prebiotic is called Ultra Flora Integrity by Metagenics. He also had one BioK probiotic yogurt a day and drinks UltraFlamX shake from Metagenics. He does take 5mg of melatonin before bed.

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@momnxtdr

My son is 7. It started with EBV in December. The doctor expected him to be better in 10 days or so. When he continued to sleep for 15-20 hours we started seeing specialists. 13 doctors later, the immunologist referred him to a neurologist. That's who put him in the diet, probiotics, etc… that was 4 months in and with in 2 weeks he was out of episode. I am not sure if he had several or one long one. He was Homebound from school the entire 2nd semester.

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Was he diagnosed with Kleine-Levin?

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@tiffanyb

Was he diagnosed with Kleine-Levin?

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Yes! He's been confirmed and reconfirmed by neurologist and sleep experts.

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Wow! I didn’t know it could be diagnosed after a long episode. It’s such a bizarre syndrome. I was told my son having three separate episodes was the way they diagnosed it. He had to havecoeriods in between where he showed no symptoms and was normal in all areas. Did your son have the derealization? That’s been the scariest for us.

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@momnxtdr

Her focus is detox and brain clarity. I've taken him in a bad mood and he's come out laughing.

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That sounds awesome! I will definitely check in to this!

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@tiffanyb

Wow! I didn’t know it could be diagnosed after a long episode. It’s such a bizarre syndrome. I was told my son having three separate episodes was the way they diagnosed it. He had to havecoeriods in between where he showed no symptoms and was normal in all areas. Did your son have the derealization? That’s been the scariest for us.

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My son had a few "good days" in between. That's why I said I wasn't sure how many. It was a very long 4 months and luckily we have a very progressive and persistent pediatrician. He was having phone consults with specialists all over the country. He was able to get appointments that were two months away moved up to a few days. Psychiatrist suggested antidepressants and Lithium. Neurologist suggested stimulants. Immunologist recommendation was to clean up gut and see what happens. We did and it has worked for over a month. I'm still nervous and walking on egg shells. I do my best to stay present. My son feels fine.

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@tiffanyb

Wow! I didn’t know it could be diagnosed after a long episode. It’s such a bizarre syndrome. I was told my son having three separate episodes was the way they diagnosed it. He had to havecoeriods in between where he showed no symptoms and was normal in all areas. Did your son have the derealization? That’s been the scariest for us.

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Yes. He's only 7 so he describes it was "things don't make sense." "Sometimes everything looks blurry." Cognitively, he could be very alert and do math with me and take a test and get 100. The next day, he'd have zero recollection of the lesson. He also wasn't able to write for about a month. The neurologist told us to get him swimming and playing tennis. We did and it worked.

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